A [far-too-informative] History of My Medical Travels

I have Polycystic Ovarian Syndrome, or Stein-Leventhal syndrome. The short bit is that it is an all-around disease that affects my metabolic abilities, among other things. Among the affected are my blood sugar (I am officially pre-diabetic, but NOT diabetic. So there. Get that? Not diabetic.), metabolism, insulin absorption (I have severe insulin resistance), hormones (don't even go there...), reproductive system, weight, and the list goes on. One thing kinda leads to another, which leads to another. You get the point.

I am overweight, and have been since about puberty. I gain about thirty pounds when I eat a leaf. Losing weight is nearly impossible. I am hormonally out-of-whack, and quite frankly, sex is often as appealing as chewing glass. I have zero energy most of the time, and there are other things that I deal with that are embarrassing enough to keep me from writing them here. Oh, and that's when I'm not on my "period", which could be a single hour of light bleeding, or four miserable months that are so severe I am afraid to wear anything other than black pants. During these times, I have at least one pair of spare pants at all times. I am anemic and exhausted, and in near-constant pain. Moving on...

As a teenager, I went to a few docs that had no idea what was wrong with me. More often than not, the official diagnoses was that I was fat and therefore low on energy. The prescription was "get off your butt and lose weight, fatty". Okay, not in those exact words, but that was the general idea. Finally, Mom sent me to an endocrinologist to have my thyroid checked. I was hopeful, as I had the symptoms, so maybe this was my problem. No, it wasn't my thyroid, but this doc was the first to diagnose me with PCOS. He said something along the lines of "you've got this...take this and it'll be better." I didn't know then what it was, I just wanted to have some energy and lose weight. The meds didn't work, but they did make me fantastically sick. I threw them in the trash one day as I puked my guts out. I stopped taking them.

We've been trying (unsuccessfully) to get pregnant for over five years. As a result, everyone I've ever met that's even thought about sex has gotten pregnant within the last five years. This trying to get pregnant is what led us ultimately to the Jones Institute for Reproductive Medicine.

The very first thing any doctor wants is bloodwork. Frickin vampires, all of em...

So here's the thing. You know that one thing that you are terrified of, that makes your skin go clammy, and every cell in your body scream "RUN, YOU IDIOT! We're all gonna DIE!"? Yeahhhh. That particular thing for me just happens to be needles. Of any size, kind, caliber. The usual result is sheer panic, hyperventilating, and fainting. It's awful, and I hate myself every time. (Don't tell me I'm too old, or being stupid, or anything else, because guess what? Everyone I've ever met has told me that, and yeah, they are right. I KNOW I'm being stupid, and I can't do a thing about it. So just shut UP already.) So, I went in for bloodwork. That day, something new happened. Yeah, fun, right? I had already told my best friend (love you Shawne) that I was probably going to pass out on her, even though she already knew that. I also told her (made her promise, actually) that they couldn't make me lay down, because...well, honestly, I'm already in a panic. Laying down does NOT help me calm down...I just panic even more. So, feeling prepared for the dreaded challenge ahead, I informed the vampire lady in the scrubs that I would pass out. She put me in a school desk and began the "you're too old for that" speech. I gave a feeble attempt at defending myself before I just gave up and stared at Shawne. Another scrub-dressed vampire demon walked into the room and started talking to the first one. It was about then that I began to feel strangely. Passing out was abnormally normal for me, but this was different. I told Shawne, "I'm going to pass out now." Kind of matter-of-factly. Vampire nurse number 2 then began a much more mean-spirited version of the "you're too old for this" speech, but I wasn't paying as much attention to her as I wanted to. Something was wrong. I felt the usual veil falling, but there was a confusion, and my heart was too fast. My body felt so heavy, shouldn't I have been unconscious and back by now? I made the tremendous effort to lift my head as the panic started to rise (something is definitely wrong...) and glared at the mean late-coming nurse. "Oh...shut...UP..." I said to her, and promptly lost consciousness. I came to again seconds later and they were dragging me off the chair and into the floor. Shawne was there, telling me that I needed to lay down, that I'd feel better if I did. I didn't fight them. I still felt...strange. Buzzy, confused, and there wasn't enough air. I lay down and they put my feet on the chair. I passed out again. I came to again, and Shawne was all scared-looking. I sat up against the door frame and ate half a donut, drank some water. Then, I passed out yet again. I know now that my eyes were purple (lack of oxygen) and my lips were blue. I was apparently having seizures. Fun, fun. That was a new one.

At Jones, I was put on Glucophage, which, as it turns out, makes me incredibly ill. It also turns out that it's the same medicine the original doc gave me that made me sick then, too.

We waited. My body refused to respond. My doctor said not to worry, and put me on the Clomiphene Citrate treatment. There are a few strange things about Clomiphene. First, you can only do the treatment three (or is it four?) cycles. After that, you can't do it anymore, because it'll likely give you ovarian cancer. No, I'm not making this up. The second great thing about Clomiphene is that it gives you the awesome affects of hormone treatments. For me, this meant ridiculous hot flashes (I was caught standing in the freezer with frozen peas in my bra more than once...) morning sickness (plus what I call the "glucophage craps" and, on a good day, vomiting from that as well), and insane mood swings. I would take the pills for seven days, wait three days, and have that awkward "let's get this baby makin' thing done" sex. For the next ten or so days, I would go through Hormone Hell (see above), and live/eat/act as though I was pregnant, for this was the desired (and likely) scenario. This meant no lifting, no caffeine, no alcohol, etc. The three or four rounds came and went, and no baby. No worries, the doc said. We'll do this next treatment and your ovaries will be excited to ovulate. All you have to do is give yourself these injections. Again with the needles! I managed it, though it was less than pleasant. I was terrified that I would go into seizures again, because I knew that if I did get pregnant and then went into seizures, it could kill the baby. That was a comforting thought going in. So, what happened? It was all for nothing. No baby. My body didn't even try. Well, screw you too.

I left Jones feeling pretty stinking hopeless. I was angry, depressed, numb. Hopelessness permeated my life. I was convinced that I would never feel okay again. I would never be normal. I would never be a mommy, and this was the most unbearable of all. I was convinced that I was unlovable...why would anyone want me? I was a fat, exhausted, blubbering, puking, hyperventilating, passing out, weak, bleeding, anti-sex person who can't get pregnant. Somewhere around this time, I found Focal Point Church. But that's another story altogether.

A few months went by, and Mom started telling me to go to this new doc she knew. I said okay. But honestly, I didn't want to go. I was tired of hope that was unfounded, believing just long enough to be devastated. I was tired of people telling me I was too old to be scared, too weak to do what was necessary. I was tired of doctors and the medical scene in general. I put it off for over a year, although in this time, I re-learned what it was like when God was enough, when I let him in so very long ago, before all the pain, the death, the drugs, the fear. Before I ran from him. My spirit began to heal, but my body didn't. I finally made the appointment with the Strelitz Diabetes Institute, specifically Dr. O'Brian, who was knowledgeable in PCOS. My first appointment was three months ago, and he, of course wanted blood work. I told him he got one shot, and to get what he wanted because he wasn't getting any more blood. Looking back, maybe it was rude, but I wasn't expecting much anyway and it wasn't worth the torture, ya know? In that appointment, he said not to worry, that we'd get me fixed. I told him rather bluntly not to make promises he couldn't keep. He got to talking about the bloodwork and it freaked me out. Not just one needle. No, I had to do it three times in one day. I actually started crying right there in front of my mother and my husband, and I hated myself for it. But I didn't know if I could do it. I honestly didn't know if I could physically make myself do it. That day was long. I didn't pass out, though I had a pretty big panic attack in which I told my mom "I don't want to get better this bad" between sobs and learning to breathe again. The thought of what I had to do was more terrifying to me than anything I'd felt in a very long while. I can't describe what it's like to have everything in you screaming to get away. Just staying in that chair took every shred of strength I had in me. But I survived it.

Today was the follow up. Looking at all the labs, Dr. O'Brian told me, very directly, that he knew exactly what was wrong with me. He and the NP then talked to me for about an hour and explained everything in the labs, everything it meant, everything it implied, and all of my medicine options. They told me what to expect from each medicine, and laid out a very clear plan. Relief washed through me...they knew what was wrong. They knew how to fix it. Then he said the magic word..."Byetta". Byetta is a medicine that will reduce your blood sugar, help your body use the insulin, make you lose weight, and preserve your pancreas. It's the ideal wonder-medication for me. O'Brian called me the Byetta poster child. The problem?

Byetta is a twice-daily injection.

Ironic? That doesn't even begin to cover it.

So, here's where we are. Everyone's got so much faith in me that I can pull this off. It reminds me of the exaggerated praise I use for a dog that is scared. But I shouldn't be the scared little puppy. It shouldn't be this big a deal. But here I am, scared to death. The truth is, the relief is gone. Everything I've been after for so long is within reach, for a price. It's right there where I can see it, but there's an impenetrable glass wall separating me from it.

How bad do you want it? Bad. Very, very bad. Then come and get it. What are you waiting for?

Can I do this? I don't know. That's not even the real issue. The real question is whether I'll be able to stand living with myself if I can't. Am I really such a coward? Am I so weak? I hope not. I really, really hope not.